Justifying Our MS Disabilities

None of us want to live with multiple sclerosis (although, it is better than the current alternative). We’d much prefer to go to sleep at night and not wonder what this disease could take from us in the night. We would rather have all the capacities we once did. I would have liked to keep going down my old path, even though I admit that there have been some positives to be mined from this experience.

Why, then, does it seem that are we constantly feeling like we have to justify what we can or cannot do?

Whether it’s simply having to explain why we’re using a disabled parking spot when we “look so good;” pleading with the boss for an air conditioner in the office; or the monster-pile of paperwork for disability insurance – making it known how our disease affects us takes up valuable energy and makes us feel worse about the disease than simply living with it!

If you can button a blouse properly one day out of three, does that mean that that you can go to work full-time? If I can walk from the car to a shopping carriage (which will act as walker as well as grocery receptacle), should I not have used my parking placard?

My all-time favorite has to do with volunteer time.

If I can rest up and prepare for a couple of speeches per year, to help raise money for the National MS Society (and then spend days recovering after), does that mean that I’m disqualified as a disabled person?

Sometimes, I feel like I feel worse (not just about the disease, but actually feel like my MS is worse) when I have to focus on justifications!

I don’t know if I’m alone, but I doubt it.

We are, by nature, a group of people who want to do things for ourselves. We want to, but sometimes the system seems to want us to be in the black or in the white… and MS is most assuredly a disease of gray!

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more